President’s Column
Welcome to the Winter edition of the HSA newsletter. I hope all our members are doing well.
Our next meeting will be a national hook up on the 25th of May from 1:30pm AEST. We will have a presentation from the 4th person in the world with a Kitea implantable brain sensor to talk about her experience with it and you can ask her questions. After that we will have some updates about the conference followed by some break out rooms so people can chat with each other. I will be facilitating at Camberwell library so if you are in Melbourne come along in person.
The Sydney and Brisbane locations may not be available due to the facilitators at these locations being unwell so check on our website or facebook events for updates. If you are not close to an in-person location you can Register for this meeting to attend via zoom.
Our next national conference is on 8-9th November, HydroConference 2025 pricing has been set as follows:
| TICKET PRICING | ONLINE | ONLINE (NON MEMBER) |
IN PERSON | IN PERSON (NON MEMBER) |
| Ticket Pricing | $75.00 | $100.00 | $110.00 | $150.00 |
| Early Bird Pricing (Discounted) | $67.50 | $90.00 | $99.00 | $135.00 |
Registrations are now open – click here to learn more and purchase tickets! Please note that some sessions will not be available online to respect the privacy of individuals sharing personal stories.
We have locked in the following speakers:
- Professor Kate Drummond Royal Melbourne Hospital
- Dr Brinda Shivalingam Lifehouse/RPA
- Dr Alison Wray Royal Children’s Hospital/Australasian Shunt Registry
- Medtronic
- The Honourable Justice Garde Victorian Supreme Court.
There are more we are in discussion with and they will be added to the schedule as discussions are finalised.
It’s coming up to Flu season and if you would like to have the flu vaccine it is free for people with hydrocephalus as it’s a chronic neurological condition. Mention this to your GP if they forget.
Donate to the HSA from your recycling. We are now a donation partner for the container deposit schemes across VIC,NSW, QLD & WA. Click here to learn more about the scheme and how you can donate.
We continue to offer virtual peer support meetings to connect with members and others who may not be able to attend our in-person gatherings. There are two types of meetings available: one focused on hydrocephalus in general, and another specifically for those seeking support with normal pressure hydrocephalus. Details for these meetings are shared in this newsletter, on our website, and through our social media channels.
Currently our Vice President and Welfare Committee chair are unwell with shunt failures, I send them our best wishes for a speedy recovery and for people trying to get in contact with them for HSA business please redirect the correspondence to me president@hydrocephalus.org.au
I wish all our members and their families good health over winter and I hope to see you at our conference.
Andrew Garde
President, HSA
HydroConference 2025
HydroConference 2025 is a national gathering dedicated to shaping The Future of Hydrocephalus Care. Held every three years by the Hydrocephalus Support Association (HSA), this event is a must for individuals, families, professionals, and advocates within the hydrocephalus community.
Over two inspiring days, we’ll explore the latest in medical advancements, connect with peers, and empower one another through shared knowledge and lived experience.
Shunt Registry Update
Last updated 31 March 2025
Data period for this report December 2016 – 31 March 2025
The registry now contains 7,031 records belonging to 5,109 distinct patients. Currently, 63 sites are authorized to provide data (2 more sites awaiting approval).
Demographics - Gender
49.1% Male
49.8 % Female
1.1% gender removed (partial opt-out)
Demographics - Age
63.7% admissions >= 18 years
34.9 % admissions < 18 years
1.4 % Date of Birth removed (partial opt-out)
Operation Type
3952 Insertions
2483 Revisions
246 Removals
Clinical Diagnosis
Four most common reasons for admission
Haemorrhage 22.3%
Congenital 17.7%
Tumour 16.9%
INPH 17.0%
Number of Admissions
Hydro Warrior Spotlight
Every journey with hydrocephalus is unique, but no one has to face it alone. At the Hydrocephalus Support Association (HSA), we recognise the strength and determination of those living with hydrocephalus — our Hydro Warriors. From managing day-to-day challenges to facing surgeries and hospital stays, these individuals show incredible resilience in the face of a lifelong condition.
Hydrocephalus may be part of their story, but it doesn’t define who they are or what they can achieve. Hydro Warriors are living proof that with the right support, no hurdle is insurmountable. Together, we share their stories to raise awareness, build understanding, and remind everyone in the community — you’re never alone.
Aydan Casey
I was diagnosed with Hydrocephalus in-utero. Which meant that from birth it was "all-systems go". Luckily my mother had her support network, particular my maternal grandmother who would become my staunchest advocate. I was lucky also to have secured as my Neurosurgeon...
Mary Smith
Interview of Mary by Wendy Brown on 26 March 2025 This interview was conducted with Mary who was recently diagnosed with hydrocephalus and kindly agreed to share her experiences so far. When were you first diagnosed with hydrocephalus? What age group were you in? I...
Maryann Bownds
I don’t normal put this out there. But with not much information knowing about Hydrocephalus (40- 50 age group) and NO CURE!! I thought it was time say something……. In 2016 at 47 years old, I was emergency rushed by plane to Melbourne ( 3hrs away from my home). After...
Latest Articles
First minimally invasive endovascular shunt for adult normal‑pressure hydrocephalus enters clinical use (USA)
First Minimally Invasive Shunt for Adult Hydrocephalus Enters Clinical Use Adults living with normal‑pressure hydrocephalus (NPH) may soon have a new treatment option. In early 2026, neurosurgeons in the United States began treating NPH patients with CereVasc’s eShunt...
If I Ever get Out Of This Place
"If I Ever Get Out Of This Place" Helen O'Toole is a long-standing member of the Hydrocephalus Support Association who spoke at our HSA Conference November 2025 about her Hydro journey and eventual ETV operation (Video available on HSA website). Helen has recently...
Kitea – First-in-human safety and efficacy trials
The Kitea Sensor A paper has been published in Nature Communications relating to the first-in-human safety and efficacy trial of the Kitea Sensor in adults and children with hydrocephalus authored by Simon Malpas et al. The report delves into Long Term Brain Pressure...
Upcoming Meetings
We’re excited to extend an invitation to all Hydrocephalus Support Association (HSA) members for our upcoming Member Meetings.
Most of our meetings are held online, with some offering both in-person and online options, allowing greater flexibility for members to attend. These gatherings are a cornerstone of our community, fostering connections and facilitating shared experiences. Attendees will also gain insight into HSA initiatives, learn about our impact on the Hydrocephalus community in Australia, and discover ways they can contribute to our mission.